Hi all,

I wondered if any cyclists here have Cystic Fibrosis.

My son was diagnosed nearly 2 years ago, and it still seems pretty daunting/scary to be honest. I just wondered how people dealt with managing the condition and being able to keep active – does it significantly impact the quality/quantity of their time outdoors?

Thanks all

Not me, but my very good friends son.

TBH, now that things are under better control (he’s 12) it doesn’t seem to hold him back. Lung function is 102%, he’s in every 3 months for regular scheduled IV antibiotics. He’s more of an outdoors kid than many I know, runs, climbs trees, competes (and wins) on his bike.

I don’t know how much use that is to you. I would say that treatments are getting better all the time, in the past 12 years things have improved in leaps and bounds- drugs like Calydeco are showing the way forward.

My mate is 40 and she rides regularly – she even used to race downhill. Her brother also has CF and I think he did a 300k ride recently.

I used to get my arse kicked at squash on a regular basis by a 30yr old bloke with CF, FWIW

my 38yr old mate has it. He manages it by swimming regularly, running on the hills and biking and watching his diet. He is quite simply an inspiration to everyone he knows. And faster than me at all the above ! He is a loving father and very busy chap. He is also a very experienced outdoors instructor and climber on rock and ice. Outdoor life is the way to go. if he says he feels poorly he really means it, not like soft lads like me. he doesn’t seem to have time for being poorly and saves it all up for a proper do all at once.

A full on cycling family near me (who featured on Wife Swap a few years ago) did Lejog about 12 years ago when their son was 7, who has cf and I think he’s still the youngest to complete it. He’s also been a handy xc and downhill racer.

Not sure if the website is still going but you could Google CF3 to see.

Edit: think I was wrong; there never was a website.

What sleepless said, the more exercise your child does the better – I spent a lot of time studying CF for a thesis. Other than that I can’t offer much support other than my best wishes and that treatment has come a long way and will likely improve considerably over the course of your childs life.

Both my nephews were not expected to see 21. They’re both now in their late 20,s and play for amateur football teams. As has been said,treatment has come on hugely but exercise does seem to be the way.good luck

Thanks for all the responses – it’s great to hear all these positive experiences.

I think there is so much panic/drama generally about the condition in the media, it swamps the good stuff.

Thanks folks.

AP